I think it was because they didn't get the full biopsy results back before telling me the diagnosis and shouldn't have told me a stage untill they had the full picture, unfortunately they did then I didn't find out untill I'd received a letter after having an outpatient appointment with my consultant. My thyroid/lumps in my neck where massively compromising my Airways so I think they where just rushing the diagnosis. 

Did they take a biopsy of your thyroid? 

Also try not to panic as they have told me that treatment will be the same if it was stage 2 or 4. If at all you are worried this situation has taught me sometimes you need to "nag" the GP/hospital to get answers. Trust your gut! 

Thankyou! 

Hey csmobro was just wondering how your getting on :) 

I came on here to reply literally yesterday but didn’t actually post a message. I’m doing really well thank you. How are you doing? So last week I was told I was in remission but they also said my thyroid is still inflamed and there’s a nodule that’s increased in size. They think it’s likely Thyroiditis but they’re going to do tests to make sure it’s not the lymphoma. If it is, it means the cancer in the thyroid was resistant. They were meant to investigate my thyroid after my first PET scan but the radiologist didn’t mention the nodule in the first report so my doctor just assumed it was thyroiditis. It feels like 2 steps forward and then 1 back but it is what it is and I’m staying positive. I hope you’re feeling better and have a positive update.

Good! I'm feeling good thankyou, still waiting for my end of treatment pet scan results so no update on that side of things. 

That's positive news that your in remission! Hoping for you that the swelling and nodule turns out to be nothing! No correct communication with these doctors! Fingers crossed for you! 

Hey, how did your end of treatment results go? I hope it was good news.

It’s been a bit rubbish with this whole thyroid malarkey. Initially they thought it was nothing and the biopsy came back negative. Then they wanted to do another biopsy just to be sure”110%” and that came back indeterminate and they think there’s a chance it could be thyroid cancer. I now have to decide if I want to watch and wait or have an operation to remove half of my thyroid (it’ll be the latter). 2024 is the gift that keeps on giving. I can’t imagine it is cancer as I’m so fit and healthy. Anyway, I really do hope you’re well and I do think to how you’re getting on.

Hey how are you? We’ve not heard from you in a while. I hope you’re ok. Please let us know how you are if you get the chance.

Hi

I hope things are moving on positively for you.   I presented with similar symptoms in 2022 with enlarged lymph nodes and a enlarged spleen  but I had also turned yellow and had bright orange pee.  Hospital were convinced I had NHL but it took 3 separate biopsies to convince them. Turns out I have an auto-immune condition called AIHA (auto immune haemolytic anaemia) which was mimicking all the classic indicators for NHL.  I was put on a 5 month course of steroids and it all went away until August this year, when I started haemolysing again and this time the steroids aren't getting rid of it.  My consultant is concerned it may have morphed into low grade non-aggressive NHL, so I have a repeat CT scan next week followed by a chat with haematology about moving on to monoclonal antibody treatment with a drip-fed drug called Rituximab (which has a lot of the same side effects as chemo). 

I am feeling strangely calm about it all, possibly because you have plenty of time with low grade NHL and the recovery rate is high. 

Hey, sorry your going thru similar. I was given steroids whilst awaiting my biopsy result and they reduced my lumps massively. So hoping that's a good sign for you and it isn't actually cancer, although as you say it's a very curable cancer to have. Hopefully you get answers sooner rather than later! Best of luck, keep positive  here if you need a chat